Undiagnosed Symptoms Community
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Avatar universal

At a loss for diagnois

I am under treatment for fibromralgia at this time W/ no improvement beyond normal comings and goings of the pain. My Dr. is uninterested in considering any other cause and has treated me w/ materials counter indicated to my other condition- Neurological migraines. (I am looking for another rhumatology  Dr BTW) I am strongly considering a misdiagnosis and would like suggestions on how to proceed to find out what is wrong.
Until 1990's I was in perfect health ( aside from ankle injures due to unusually shaped bones therein)
  In 1990's was exposed repeatedly to high doses of insecticides through work and home. 2 other people, several tanks of fish and our cat were negatively effected by this.  I was treated for fatigue, blood pressure issues as well as multiple bouts of bronchitis, 4 bouts of pneumonia, stress, migraines and contact dermatitis in this time. I also gained over 100 lbs.
  After leaving that job and moving my health has improved.Including being able to loose weight ( however I regained most of it due to steroid treatments, which did not help)  However I continue to have debilitating migraines- both cluster and a crippling blinding pain that can cause me to black out type. AND chronic intermittent pain in my hands and feet accompanied with a feeling of extreme swolleness ( which is NOT  actualy present) upon waking and an inability to 'move' limbs correctly, I stagger and am disoriented frequently ( usually lasts 30 to 45 min.) There is intermittent lung congestion/ breathlessness most often with breathlessness) upon waking. All else is usually at its worst when I awake and improves as I move about, however remaining ( car driving, working at a desk) still can encourage a return of the pain.
  I had all 18 of the fibromyalgia tender points used to diagnose the disease. the Dr believed deeper sleep will alleviate my problems, however to date this is not the case. The meds do not help and I feel no better. Topomax HAS helped significantly however the lack of mental accuativness makes it impossible to use as a treatment.
Excersize exacerbates the pain, it will be substantially worse when I wake up next no matter what I do. Lack of sleep triggers a blood pressure drop and migraines. Weather affects the pain bouts. Low pressure triggers the debilitating migraines. The clusters come and go w/ out warning. Currently my migraine treatment has significantly reduced the number, degree and duration of them and I am satisfied w/ it. My migraines are said to be neurological in cause and mimic a mini stroke. They are said to be capable of causing brain damage and potentially (should they be untreated and allowed to go on as I used to do) could kill me. Hence an absolute need to remain complient w/ treatment and prevention ( which I do) MRI showed no organic damage or physical cause.
  Thoughts? Suggestions?
6 Responses
1636858 tn?1307461994
I dunno what to suggest, but the latest thing to do is to look at your diet and see what is missing from it.  Omega 3? Magnesium? etc  Start looking there, at least you are helping yourself.
Avatar universal
According to all the blood work my nutrition is Aokay. I take an extra 500mg  Magnesium as per the Neurologist's ( migraine dr's ) directions. I eat low fat ( grew up on the heart diet, can't abide the taste of it any more. I  even use olive oil flavored w/ butter flavoring instead of butter for most things) Husband is lactose intolerant where Milk ( not cheese) is concerned. So we use lactose free milk. I cook often according to season, grow and organic garden and use it liberally.  We have more red meat then is recommended ( I burn through lysine and hate loading up on suppliants, ALWAYS been this way)  also cook a pretty wide assortment of vegan and vegetarian meals as I enjoy it. Currently cutting out white sugar and using mostly raw honey from my friends apiary. We do fish 1 or 2 times a week. Though I LOVE fishing this time of year and so it may increase. We try to have salmon or cold water fish about 3x a month.  Though again, I prefer to have it when its in season.
351246 tn?1379685732
Welcome to the MedHelp forum!
There is a strong possibility that this is fibromyalgia. Unexplained aches and pains coming on and off could also be due to chronic fatigue syndrome, rheumatoid arthritis, lupus, Crohn’s disease, H pylori infection, anemia, liver disorders, diabetes, hypothyroidism, Vit B12 or Vit D deficiency and due to calcium or magnesium deficiency. It can also be due to sleep related disorders. At your age it can also be due to premenopause and hormone replacement therapy may help.
Since I cannot examine you and know other related conditions you may be having, nor is a detailed history possible on net, I have listed the various possibilities that should be looked into. Please discuss with your treating doctor.
Take care!
Avatar universal
Hi Doc.
I Appreciate your response.  I have been tested for RA , Lupus, Lymes disease, Anemia, Liver disorders, diabetes, Hyper and Hypo thyroid, Vit deficiencies. Probably more, I forget. My GP said it was POSSIBLE it was CF or Fibro at an early onset in 2004 but she did NOT want to give a diagnosis for it as it was very infrequent at the time and tests always came back spot on perfect. I was On birth control since 1990 when I was 20.  The 1st birth control I was on was NOT the right dosage but as I went on it via the health dept I was unaware what to expect or what was acceptable. When I began having health issues in 1995 I met my current GP ( WONDERFUL awesome lady who is familiar w/ alt med and encourages a well rounded and integrated approach of supporting the body's ability to heal itself rather then cover up symptoms)  She has run battery after battery of test to no avail. She can tell SOMETHING is wrong, but to date the specialists she has directed me to have, all but two, been a flop. They treat w/ panacea and 'decide' what you have BEFORE an exam.
  I have essentially listed all the issues I am having. Beyond what was posted, I come from an international family ( Adopted, genetically I am Dutch/Irish, have been tested for scaradosis ( Not sclaradosis/derma,I forget) Which came back negative) While in India in 1974 I contracted Yellow Fever and was treated w oral medications. I received little medical care in my youth therefore believed my bone wracking cold chills every winter were due to the temp of the house. As an adult I look into theses things as I want a good quality of life as long as possible. Tests for thyroid ( MANY tests) come back normal HOWEVER I often loose the moons on my last 2 to 3 fingers, a naturopathic indicator of low thyroid function. I have been advised NOT to take OTC thyroid supplements due to the chance they can cause heart issues. I follow this advise but as I try to limit salt intake I add more kelp into our ( me and Hubbie's) diets. My lymph nodes come back smooth as glass and no issues. I rarely get a 'normal' illness, like flu. However is there is something screwie about I will probably be the one to get it. Case in point, in 2004 had my Titers checked ( returning to school to finish my BA didn't want to get a MMR shot as I am needle phobic) Came bake w/ excellent titers in all tested areas ( MR was a little low but w/ in acceptable range for college admission!) and 2 weeks later I was back in because of a strange migraine unlike any I have had so far. Guess who had Encephalitis? NOT equine, but a mosquito born type often seen in late summer around here. I was already over it for the most part before I suffered to come in and bug my Dr. She of course read me the riot act about that (As usual)  said I was far enough over it I could ride it out the remaining few days w/ out assistance But needed to quite 'toughing it out.' The next such lecture was in  2005 when she sent me in for the MRI and we began this hell trip of creepy meds. between these events, I have been relatively healthy, sev for my mystery symptoms, a possible bout of west nile ( my work place was a hot spot identified by the CDC and I ended up w/ symptoms ( thought to be food poisoning at the time) before the boss finally confirmed our birds were testing positive and we were the spot mentioned on the news), and  of course my eternal cold chills ( Not Rynards, I only get 2 colors) but if you are familiar w/ the 'tingling' effect of topomax ( was on it 2005-2007 and BTW its more like phantom limb pain then 'tingling' LOL I nearly broke through a car floor board trying to 'wake' my foot once)   the cold chills I get are a body wide wracking version of this.  Now I have a basal temp of 96.8 ( Born dyslexic we say, My friend (like me) was often sent to the new 'coremen' in her marine unit to teach them that not everyone is 98.6) and I RARELY get a fever. However I have had pneumonia 6 times. 1st in 1986 when I received chemical burns to my lungs (1st case)  1 month after receiving a clean bill of health I was back in the ER w/ it again, AND anaphalaxis due to the meds I was on for  'the cough.' I do NOT smoke or drink ( allergic to alcohol) and was an outdoor enthusiast much of my life ( Backpacked the mesas of Wyoming when I was 13) 1 HAD an adult weight of approx 150 ( Highschool 145 5'5" PRE exposure to insecticide ( Dursban/diazanon) 155  5'5" POST exposure- 200+ Post steroid treatment 2009 260)
  tom be continued...
Avatar universal

Continued from previous..
While living at the 'apt' 1992-2004 ( Primary chem exposure site) I had pneumonia 4 more times the last begin when we bought our home and moved Nov 2001. I was sick w/ Migraines and fatigue when I saw the house in Sept and recovering from sever bronchitis/pneumonia ( LAST case I've had to date)and on oral steroids when we moved in in Nov. Bronchitis had become a yearly thing. I THOUGHT because my elder biological sister got it every fall as well it it was genetic But now I know her issues came from heavy smoking and drug use. I quit the job where I was continuing to be exposed to the chem (secondary exposure site, contact dermatitis on certain spray dates- golf course) the same time we moved from the apt. The apt had not been a source of new exposure for about 4 years at that time ( our cat was permanently neurologically impaired from this and suffered seizures the rest of his life. The exposure is NOT assumed, it is KNOWN but until recently I considered myself too 'robust' to have been adversely affected by it. I am now reconsidering that) These are the reason my GP isn't willing to go for a full fibro diagnosis yet and as I don't have the Epson-Barr virus titers/markers or whatever  she's not cool w/ CF either. I find watching my carbs helps. I am currently going off white sugars as well. I feel the steroid treatments may have effected my endocrine system and caused me to become insulin resistant. However following a 'south beach' diet I do NOT loose weight ( I HATE steroids) so I am trying to find a workable diet plan right now as I want to loose at least 120 lbs. ( Ideal weight according to my Dr is 150lbs for me, my gym coach wants 135-140lbs so I go w/ my Dr, she's smarter and knows me better)
   My 'fibro' dr wanted to say EVERYTHING was fibro related and was treating me w. meds I could not tolerate, meds that were causing Migraines and meds that we had already discussed and decided NOT to use because of adverse reactions to similar meds Due to his nonchalant attitude toward the additional problems he is causing me and his bullheaded  tunnel vision in regards to a diagnosis ( He had me nearly bed ridden for 4 months trying to 'force' me to get sufficient rest, I was only up for work or to exercise. That is an Unacceptable lifestyle for me. ) I said forget it and went back to how I prefer to live my life, however I DO take into account what actions I do today I will pay for tomorrow so I choose what I do carefully so as not to over do it.  Some days I am fine, others, just that little 'garden puttering' will wipe me out w/ pain for several days.  So, take into account this info. A LOW BP  Up a little lately 110 over 70  usually. Normal fair skin tone, not oily or too dry. Hair thinned when I hit puberty  but its still full, just brittle, but thats another story, its HOLLOW, no cortex) small freckles on sun exposed areas, get checked for melanoma every 2 years. Yearly when I was working outdoors and hiking/fishing more. So far a-ok. Raised by a family w/ sever cancer/lymphatic/cardiovascular issues so I habitually practice preventative diet and exercise. Was walking a mile a day at least ( w/ my dog)  on top of any weekend hiking, week day wildcrafting ( ethnobotanist /field botany training) or rowing on the lake. Now I am limited to occasional weekend outings,  EASY hiking ( no more rock repelling at this time for me) or puttering about landscaping my yard/growing an organic garden.  I am not pre/peri menapausal ( checked that out last Oct, went off birth control at that time) Have had issues w/ endometriosis ( why I was on Birth control) and figure I can suck it up another 10 years till menopause ( My Gyno is NOT amused I think this way. ) Beyond that there really isn't much to tell. I did have a swelling issues in my legs from 2004 but the Birth control I was on is most likely the cause (Yasmin) and since going off it the puffiness has been improving.  Yep, Thats it. can't think of anything else. Any further thoughts or suggestions?
1636858 tn?1307461994
Right, that 's a lot of things.  But 1)  The spine can give a lot of trouble to you if it is not aligned properly so go to a chiropractor and see how that helps. 2) Too much medication or just the wrong meds can make you feel awful especially if you have a sensitive system. So cut down on meds if the Doc allows it. 3) Anxiety on top of this or because of this sets up another lot of symtoms, so try a tranquilliser for a few days to see if that helps.  Tranquillisers are very addictive, so if they do help ask if you can take one a week, just to keep the anxiety from becoming overwhelming.  4) Low BP can make you feel awful, I sometimes take a rehydrate solution which seems to help and this is one time you can have salt which will help to raise it up.  Hope these measures help.You will be surprised that the pain will go as well.  Let us know how you are doing? Lol
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